A glioblastoma (GBM)-specific app, called OurBrainBank, efficiently collected patients’ symptoms – offering many hope for future research, according to founder Jessica Morris.
BY Kristie L. Kahl
(GBM)-specific app, called OurBrainBank, efficiently collected patients’ symptoms – offering many hope for future research, according to founder Jessica Morris.
Diagnosed with glioblastoma herself, Morris teamed up with physicians at Columbia University, the Dana-Farber Cancer Institute, the University of Michigan, Memorial Sloan Kettering Cancer Center and the National Institutes to create a database of de-identified patients with GBM. Using the app, patients can view or export their own data and create data reports that are send to their medical team.
“What we're doing there is enabling people affected by the disease, both patients and the people who care for us, to everyday to take time out and think, 'How does this disease actually feel? How did I sleep last night? How is my nutrition today? How is my depression?'” Morris said.
“The doctors want that because they want to spot insights and use the data that we're collecting in the form of the free OurBrainBank
app to be more exploratory in looking at how this disease actually relates to the individual experiencing it,” she added. “They think that there may be some insights there that can lead to ultimately new treatments and a new approach.”
At the 2019 American Society of Clinical Oncology
(ASCO) Annual Meeting, Morris and colleagues reported outcomes from the initial stages of the app.
Recruitment of patients relied heavily on social media and patient run online support groups, according to the abstract.
Since March 2018, 400 regular users – a median age of 48 years – who are registered for the app reported on sleep quality, exercise, mood and fatigue, as well as an additional six symptoms that are most relevant to their clinical condition. The majority of patients (53%) received their GBM diagnosis less than a year before using the app, while 25% received theirs one to two years between app usage.
The most commonly tracked symptoms were exercise, fatigue, mood, sleep quality, appetite, memory and concentration.
Patients were alerted to capture symptoms at least weekly and between 7,000 and 8,000 datapoints were captured, Morris said.
With an average rating of 7 (range, 1 to 10), patients found the symptom tracking useful.
Next, the group plans to collect passive data from smartphones and other device trackers, and also go global with their efforts.
“This disease needs more experimental treatments. It needs more research. It needs more clinical trials. The data that we're collecting is helping that pursuit,” Morris said. “Our mission at OurBrainBank is to move glioblastoma from terminal to treatable, powered by patients.”